During the Q&A session at the XMRV Conference this week, Dr John Mellor, Chief, Division of Infectious Diseases Director, HIV/AIDS Program, University of Pittsburgh Medical Center,

Made a confusing statement regards XMRV, he made the suggestion that XMRV could be a microepidemic being transferred parenterally, his statement from the conference is as follows.......

Dr. Mellors: So just to shift gears a little bit. I’d also like to make a plea that CFS and prostate cancer be separated as follows. The epidemiology of putative XMRV or other MLV acquisition related to prostate cancer may be completely different from that of individuals with CFS. For instance you go on the internet and look at what types of therapies that individuals with CFS can acquire – and that’s in the public domain – it’s frightening. And what is given to them behind closed doors in desperation it leads the imagination astray to wonder what’s actually happening– and could there be a completely different microepidemic being transferred parenterally with CFS that has absolutely nothing to do with acquisition of a retrovirus related to prostate cancer. So I really think we have to draw a line and not say the epidemiology is the same for both entities Nor, most of us would agree the pathogenesis is not the same.

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I read that a CFS sufferer wanted further explanation about what Dr Mellor meant and so wrote him an email, his reply i've seen posted on a few forums, is as follows.....

As a physician investigator I try to keep an open mind to possibilities for why XMRV is being detected in some patients with CFS but not others. One possible "far out" explanation, for which I nor anyone else has data yet to support [bold in original], is that a product is being injected or infused into some patients that is contaminated with or derived from mouse cells containing XMRV or MLVs. There are unregulated products without quality controls being advertised and some of these may be used by patients with CFS who are desperate for relief from their symptoms.

There have been several well documented instances of contamination of vaccines and medical products with transmissable agents, despite regulation and quality control procedures in place. So, the potential for this occuring with unregulated/uncontrolled products is real and should be considered.

John

John W. Mellors, M.D.
Professor of Medicine
Chief, Division of Infectious Diseases
University of Pittsburgh School of Medicine

I personally feel insulted by Dr Mellor and feel he has insulted the CFS community. He is suggesting that people in the UK who have CFS, are injecting or being infused behind closed doors, In the UK it is VERY hard to use unregulated products without quality controls, Maybe he should come and live in the UK and see how hard it is to get drugs.
We are ill....we have not injected XMRV into our bodies.

Wow, I don't know what to say. How in earth can you be offended from this mail?

He isn't suggesting anything at all, he is just speculating on the discrepancy between studies. As he aknowledge himself, it's a 'far out' explanation and while I certainly doubt this explanation could be the case we should ALL be open-minded. You can't just expect from the research world to be open-minded while you get offended by the smallest things possible.
And quite frankly, I think it is YOUR comment that is outrageous and won't help ME/CFS sufferers ANY further. We need to collaborate with scientist, not drive them away by alarmist comments as yours.

ETA: Maybe my comment comes off a bit agressive, but I'm seriously convinced comments like this will oppose scientific breakthroughs.

I had wondered what he was darkly hinting at when he made the original comment in the Q&A. Well, all I can say is it's a creative idea, but bit of a stretch.

Even if some CFS patients are so desperate for relief that they're getting some kind of unregulated illegal injections (????) what percentage of the positive patients could that *possibly* account for?

There is a fantasy hinted here, at about the deep, dark practices going on behind our closed doors, that I must admit sounds a little bizarre. I only *wish* there was something that interesting going on in our darkened bedrooms. I can only vouch for myself, but I can assure Dr. Mellors that I have indulged in only 100% mainstream medicine, and spend the rest of my time surfing the internet and whimpering.

What am I doing wrong, not to get invited to the Satanic rituals where we inject each other with mutant mouse blood? I feel so uncool!

I actually thought this was what he meant when I first heard him speak, but when I read the transcript decided that this interpretation would be too 'far out'.

I don't think it's offensive - but it is kind of funny. It would be quite a coincidence if 70% of CFS patients were trying some crazy alternative therapy that happened to be infecting them with a retro-virus. CFS patients are desperate.... but not in an uniform manner, especially not for the crazy stuff that a tiny minority engage in.

Having homeopathic pills spread XMRV amongst patients desperate to get well but with no effective treatment would bring with it a rather grim comedy, but I don't think it's likely.

I hope the members of the mecfs forum don't get too enraged by this and do things that might cause Dr. Mellor to shy away from HGRV research. Summerflower, if you are a member over there, it would be great if you could share this concern. I suspect that some other members at phoenix rising feel the way I do.

When I was watching the Q and A session this man really annoyed me. His tone seemed to be very biased, alomst hostile, against CFS and its sufferers. After reading this response, my irritation has turned into pity. Although we should give him credit for the inventivity of his theory, but talking about a percentage of 86.5%, this is complete BS ofcourse. I hope no one takes this seriously.

I think this is way way out there. I don't know if I'm insulted per se but flabbergasted. Why, exactly, are these patients in their doctors offices to begin with for these treatments that he speaks of? It's not because they are healthy...so they are sick to begin with- BEFORE they get whatever it is he think is being injected.

In my case, there's no chance this happened. So i just think it's ridiculous.

Here's a scenario. Many CFSers have adrenal issues. One common alternative treatment for 'adrenal fatigue' is 'raw porcine adrenal gland'. Yes, that a pigs adrenal gland, ground up and put into a capsule.

It's very easy to imagine that some unknown pathogen could be in there.

I have seen it in many 'adrenal support' preparations. I have used some of those products. I would bet dollars to donuts that many here have used these without even being aware they were taking raw pig glands.

I am sure he is wrong, but it's not as ludicrous as you might be thinking.

Hmmm. This is an interesting notion. I received IVs for cancer and cfs treatment. I guess this is something that should be considered. But I have a feeling most CFS patients never go the IV route. Or could this occur orally?

One common alternative treatment for 'adrenal fatigue' is 'raw porcine adrenal gland'. Yes, that a pigs adrenal gland, ground up and put into a capsule.

It's very easy to imagine that some unknown pathogen could be in there.

I have seen it in many 'adrenal support' preparations. I have used some of those products. I would bet dollars to donuts that many here have used these without even being aware they were taking raw pig glands.

I am sure he is wrong, but it's not as ludicrous as you might be thinking.

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Parenteral means by injection, not orally. I actually thought he was referring to vaccine contamination as the culprit, not some strange preparation we have received as a treatment, when I heard him in the Q&A. He did mention that in the email.

I wouldn't do anything to cause him to turn against us. Once he's proven wrong by the science he may become a valuable ally. You never know.

I think one of the most "far out" things about the whole notion is the fact that getting a doctor to even believe you are actually sick is a huge feat in itself and it's the rare CFS patient who is believed to be more sick than hysterical by their doctors. But then add to that the odds of getting said believing doctor to actually inject you with some weird, unproven elixir of God knows what is really pushing the reality envelope now, wouldn't you say? I'm sure it happens, but I bet it happens at about the same frequency of say, pigs flying, or something along that line.
C'mon, this isn't insulting, it's hysterically funny!

Parenteral means by injection, not orally. I actually thought he was referring to vaccine contamination as the culprit, not some strange preparation we have received as a treatment, when I heard him in the Q&A. He did mention that in the email.

I wouldn't do anything to cause him to turn against us. Once he's proven wrong by the science he may become a valuable ally. You never know.

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Oh, I didn't catch that. So not so likely at all really. But still just silly, not insulting.

I thought his statement was kind of peculiar when I heard it. The whole "what is given them behind closed doors" thing. I thought at the time that he was just kind of saying, please don't confuse those crazy people with people who have a real disease like prostate cancer. But I figured that doing separate epidemiological studies made a certain amount of sense, even so.

Now that he's clarified it, it's just bizarre. It sounds like the conspiracy theories go both directions. But I think I can understand how someone could come up with that idea from cruising the Internet, especially if he was leery of alternative medicine to begin with. Most patient forums have discussions about therapies that are not mainstream medicine. I'd say it's inevitable when mainstream medicine offers little more than antidepressents. But what Dr Mellor possibly doesn't realize is that most patients don't have access to all these alternative approaches. Most of us can't afford it. Insurance doesn't cover anything outside of mainstream, Medicaid certainly doesn't, and most disabled people are short of funds. The percentage of patients getting any parenteral treatment is very low, I'm sure. There's no way it could account for a microepidemic.

It sounds to me like someone who has been convinced that ME/CFS was psychological, who is being confronted with evidence that a large percentage have a retrovirus, and is trying to think of possible ways to reconcile those two ideas. "All those crazy hypochondriacs trying off-beat treatments behind closed doors probably picked up a retrovirus perenterally" would be one way to account for it without having to make the paradigm shift that those people might actually be sick.

I think we can expect to hear more odd theories like this as those who have been sure we're crazy try to incorporate the new reality of XMRV into their paradigm.

There have been several well documented instances of contamination of vaccines and medical products with transmissable agents, despite regulation and quality control procedures in place. So, the potential for this occuring with unregulated/uncontrolled products is real and should be considered.

John

John W. Mellors, M.D.
Professor of Medicine
Chief, Division of Infectious Diseases
University of Pittsburgh School of Medicine[/I]

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Hmm, I wonder what he thinks about how prostate cancer patients might have gotten it. Presumably they wouldn't be using "unregulated/uncontrolled products." It may be good news that people like him are starting to question "Where did this come from? How did it get from mice to humans to begin with?" I'd like to know that, too.

Just an observation from me putting myself in someone's shoes that doesn't know anything about CFS as Dr. Mellors doesn't, but neither does 95% (or higher) of the medical establishment.

What if you jumped on the internet and jumped into just about any forum. Your trolling through all of the threads and you run up on one titled "Stem Cells from Panama / Costa Rica making CFS patients better". We all know what it is talking about, but imagine what would go through someones mind that didn't know. I would certainly be thinking some weird stuff (maybe even more weird than his). What's even funnier though was he was sitting in the same room with the Dr. prescribing them!!

This is just an example I made up and I certainly am not suggesting anything. I have know idea what Dr. Mellors was thinking for sure and I am definitely not knocking Dr. Cheney's treatment. Just remember that this is probably the only disease known where the patients knowledge far exceeds most of the sceince community. Our intelligence is exactly what he needs to be seeing from us and once he has seen it, I don't think he will have that kind of thoughts or ideas for long.

Wow, I don't know what to say. How in earth can you be offended from this mail?

He isn't suggesting anything at all, he is just speculating on the discrepancy between studies. As he aknowledge himself, it's a 'far out' explanation and while I certainly doubt this explanation could be the case we should ALL be open-minded. You can't just expect from the research world to be open-minded while you get offended by the smallest things possible.
And quite frankly, I think it is YOUR comment that is outrageous and won't help ME/CFS sufferers ANY further. We need to collaborate with scientist, not drive them away by alarmist comments as yours.

ETA: Maybe my comment comes off a bit agressive, but I'm seriously convinced comments like this will oppose scientific breakthroughs.

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I couldn't agree more, I am very concerned about patients emailing researchers. I went into great lengths discussing my view on this issue in this thread post (click here) so I will keep it short here.

This is a critical time in CFS research and we need to be doing everything we can to win over researchers no matter how opposed they are to CFS instead of creating more enemies. Attacking every single researcher who questions anything about CFS will just create more enemies in the research world and only hurt us. Do you want your condition be taken seriously by the medical community and have some hope for treatment in the coming years? Then stop this nonsense.

I'm afraid the good Dr may have got a little carried away with scare stories about unlicensed treatments, self administered ant-retrovirals etc.

As we all know, access to these products is extremely limited and only a very, very small minority of patients could afford or be prepared to try them.

What he also fails to realise is that, throughout most of Europe, we only have access to socialised medicine which means the only treatments available are CBT and GET - which as we all know are entirely devoid of content, murine or otherwise.

Just a general philosophical point. If you put someone in their place, you might get them to back off but you might also create a roadblock to progress. If you keep it cool and present facts and rational argument, there is always the chance that they might be convinced and join your side later. Thats a win-win scenario.

Look at the downside of this approach: enemies 0, allies 0
Versus the upside of this approach: enemies 0, allies 1

Now compare this to starting a flame war, hate mail, and over the top letters to a doc:

ememies 1, allies 0

The chance of us getting somewhere and finding a cure is much higher if are at least polite. I don't know about you, but nothing is going to get between me and I cure if I can help it. Niceness wins (this doesn't mean you have to be a doormat - just be polite if you have a disagreement with some doc).

I would also like to point our that if we can turn even one hard core biopsychosocial doc, we have won a major victory.

Bye
Alex

PS I know it isn't always easy, I am sitting on some very powerfull rage, but I don't want to let the rage control me: instead I try to use it to fuel my campaign for research.